Agonizing pain in finger tips.

[lynnieb]

For the past 2 months, I have been suffering badly with painful fingertips. Sometimes, they have little splits/cracks in them, that catch on everything. They won't heal, and my nails have even stopped growing. Even when I do have a brief respite from the cracks, the pain is STILL there. I only have one functioning arm, and this pain is making life impossible. Is it ET related? I did used to get pain in my toes, until I started on Aspirin. Is this the same thing, I wonder? Thanks for any advice.

[DH65]

I've been having the same dry skin, cracking , cuts on many fingertips but I just figured it was dry skin from washing my hands too much. I use Shea butter and other items, especially at night and lots of bandaids. They can be painful. I have wondered if I need more fatty acids , fish oil.

[Mardigras]

Hello Lynnieb,

You could try Vaseline and white cotton gloves at night. It is better than moisture creams and seems to at least help the splitting.

I hope it works for you and your skin feels better soon.

Hugs,

Marcia

[lynnieb]

Thanks for the replies. I do use cotton gloves with various creams, but the splits heal, and after a day or two, they return. I have permanently slippy hands from all the cream I rub in! It is wierd that my nails have stopped growing too.

[Stanley28]

Hi Lynnieb - i really think you need to take medical advice on this one. i recently had pain in my fingers (to the extent it was keeping me awake at night) which i ignored because i was busy and then my fingers turned blue. which isn't good. the lesson i learnt was to get medical advice quickly and to trust your instincts.

[Mazcd Partner MPNVoice]

Hi Lynnieb, it would be best to see your doctor about this. Maz

[socrates_8]

Hey LynnieB...

Not sure if this is the same thing as I also suffer from periodically or not...?

If it is, I believe that this condition has long been a part of my life, and it is called: Erythromelalgia...

“Erythromelalgia is the main pathognomonic and presenting symptom in patients with essential thrombocythemia and thrombocythemia associated with polycythemia vera.”

Michiels immediately focuses on the painful swelling and burning frequently affecting extremities of patients with chronic MPNs. The condition described in 1878 by Silas Weir Mitchell, who supplied a manuscript footnote tracing the etymological roots of the condition i.e., The “burning painful and red congestion of the foot and hand disorder might conveniently be labeled erythromelalgia, (From the Greek: erthyros=red, melos=extremity and algos=pain.)”

At the time the condition, then called Mitchell’s Disease, was not separated into the more common form of erythromelalgia that arises from a disease state and primary or congenital idiopathic erythromelalgia.

L.A. Smith in the American Heart Journal (1938) first described aspirin’s effect in promptly relieving erythromelalgic pain over a period of approximately three days. Michiels established the involvement of platelets’ role in erythromelalgia through evidence of platelet consumption, platelet proliferation and increased platelet activation markers obtained through skin biopsy of swollen red areas. It was Michiels and his associates who. during the 1975-1981 period, discovered “the specific subset of patients with burning painful red extremities, who experienced clinical relief with aspirin, all had elevated platelet counts associated with thrombocythemia…or associated with polycythemia vera.”

mpnjournal.org/aspirin-and-...

By the way, I believe that since I have been taking low dose aspirin, that my 'Erythromelalgia' has greatly improved. Hence, the improved circulation obviously aids this condition, in my view...

Hope that this helps.

Best

Steve

(Sydney)

[sksar in reply to socrates_8]

Hi Steve, Just picked up on your reply to linnieb and your mention of erythrombelalgia. which I believe I suffer from too. I have mentioned it to various health professionals but as its so rare no-one seems to know much about it and so at the moment for me its a self-diagnosis which I am attempting to find more about via the internet. Mine has been affecting my left lower leg for over a year now and I think it is just starting to affect my right ear (I have ET by the way diagnosed 4 years ago and I am taking Hydroxy and aspirin).

I wonder if you would tell me of your experience with this condition (erythrombelalgia I mean) as it seems so rare, I would be interested to hear how you cope with it and what if any medication you take for it and advice you have received. I see you live in Sydney, one of my favourite cities, I live in the UK. Thanks, Sue

[socrates_8 in reply to sksar]

Hey Sue...

Lovely to be making your acquaintance... Circumstances are irrelevant to me (best to be philosophical in my view

Retrospectively, I learned through my MPN condition (originally ET - May 2016), that I have also suffered from a form of 'Erythromelalgia' for quite some time...

It was mainly in my hands and fingers for me, although, I did (do) also experience some foot & toe pain on occasion...

I learned that the painful burning sensations, all very much improved, via the taking of low-dose aspirin. My circulation has improved immensely, and perhaps, my exercising and my new Ketogenic diet regime, are also assisting my results to date...?

In any event, my 'Erythromelalgia' is much better today than it was previously prior to my ET diagnosis...

I have suffered in both heat, buring and extreme cold sensations in the bones of my hands & feet etc...

Hope this helps...

Steve

[sksar in reply to socrates_8]

Hi Steve, thanks very much for your speedy and informative reply. Interestingly I did not suffer from erythrombelalgia before being diagnosed with ET and only in the last 2 years has it manifested itself. I have however suffered from Reynauds phenomenon for quite a few years which apparently is linked to our blood disorder too. I guess we are all very different in the ways these conditions affect us but this is a great forum for sharing information. Regards Sue

[socrates_8 in reply to sksar]

Hey Sue...

Yes, it is the best forum that I have found thus far for people like us with an MPN to frankly discuss our various conditions...

I also believe Sue that 'Reynauds' & 'Erythromelalgia' are often confused between the one and the other etc...

And as you say, like our MPNs, they are quite rare conditions (Reynauds' & 'Erythromelalgia').

My fingernails used to be very badly pitted and scarred. All my nails have since improved dramatically, along with my improved circulation.

Hence, whatever exercises we can regularly accomplish, I believe will aid our MPNs immensely, as it already has for me...

Have an excellent day Sue...

Steve

[Annie46 in reply to socrates_8]

The agonising pain in my big toe was what ultimately led to my ET diagnosis . It still 'buzzes' with pain & indicates to me when things are changing .

[socrates_8]

PS. But Maz is correct... you should consult your medical team and ask them for their input etc...

S.

[teenia]

hi, I to have been suffering with finger and hand pain for at least 7 yrs ,thinking It was due to a fall on hands. Alfull pain burning and selling and sleep less nights ,only to find that it is a symptom of my et. I was have had et sence 2009 that I found out . Anyone know more on this symptom and why? Teenia

[lynnieb]

Oh the joys of living with ET! And NF!! One more thing and I'm halfway through the alphabet, ha ha....

[Johnsb]

I use the Norwegian Formula from Nuetrogena, it works really well for me healing my cracked skin.